This is not what I had planned ….

Being a parent is a massive compromise.

Even for those parents who were absolutely made to do it, who love and relish every given moment, there are inevitably compromises, right? It’s just that some people mind compromising less, or perhaps they naturally find the compromises less compromising? For some, parenting makes them feel complete; it’s who they were always meant to be, their ultimate goal in life; content.

However, parenting isn’t for everyone; and I have tonnes of admiration for anyone who realises this (preferably before having children) and chooses not to be a parent. This decision is far more brave and less selfish than having kids because it’s what you feel you’re supposed to do, or because ‘everyone else is doing it’. Having children is, of course, a life choice as any other; career, relationships, geographical location etc but I do think there’s an ‘expectation’ culturally that it’s the ‘norm’ and is what ‘should be done’ and frankly, that worries me.

I think there’s a big problem with society and the pressure it puts on people to procreate; to get married, be monogamous, buy houses and all the other ‘cultural norms’. In my opinion, it’s a recipe for disaster; especially nowadays when we should be encouraged and empowered to follow the life we want and be who we really are.

For me, parenting is a huge compromise. Parenting a child with additional needs, even more so. Not because being a parent requires sacrifice, or not always being able to do what you want (if you truly want to be a parent, then I’m afraid you need to accept that from the outset) but because parenting Martha in particular, makes it impossible to be the parent I want to be. The parent I thought I would be.

Parenting a child like Martha requires a huge quantity of tolerance and patience – neither of which I am naturally blessed with. As a mother, I’ve always been quite strict. With Elke, for example, I’ve never stood for rudeness, swearing, bad manners or rule-breaking. Boundaries are in place, she knows what they are and she’s aware of the repercussions should she choose to ignore them. With Martha, I’ve had to completely re-learn what those are and to remove my own learned expectations, in order that I can understand her better, and save myself from going completely mad.

There is a great deal of compromise, not just for me, but for everyone involved in Martha’s life. A great deal of ‘unfairness’ too (or at least, what we perceive to be unfair -which is often related to our expectations, which we must learn to modify according to our circumstance – a whole other conversation perhaps) which can be difficult to deal with – especially when you’re ordinarily a bit of a perfectionist (who, me?).

I’ve had to (try) park that part of myself and learn to gradually ‘let it go’ along the way. Not entirely of course, it’s a part of who I am and I’ll never be satisfied if certain things aren’t done the right way (according to me!). But I’ve had no choice than to get used to the fact that my home is never going to be ‘perfect’ despite it being one of the things I love the most. Believe me, it’s a tricky dynamic loving interiors and vintage collectables when you live with an impulsive ‘thrower’! Greasy hand prints on walls only painted a week ago; whole cups of coffee flung down the stairs when we didn’t quite have our eye on the ball; holes in walls and stains on carpets – stuff that I simply don’t have the time or money to constantly keep on top of.

I can’t count the number of favourite vases, bowls or ceramic ornaments that have been lost to an anxious outburst. There’s been many a tear shed over a special gift or family heirloom. Recently, I’ve had to box up most of my favourites or anything of any emotional or financial value and put them away in the attic, unsure of whether they’ll ever see the light of day again. For some things, it’s just not worth the stress. However, I’ll never completely compromise. I still love my home and having nice things around me – I don’t want to live in an empty box. I just have to be careful about where I place certain things and be more selective about what I have on display. I’ve also become hardened to the pain of losing things over time and it doesn’t have quite the same emotional effect on me that it used to. It’s kind of my fault if something get’s broken because I knew the risks and chose to take them. Tit.

I’m super-conscious that when I relay some of the really bad stuff that’s happened or the seemingly awful things Martha has done, it may seem like I’m vilifying her; I’m absolutely not – and I never want anyone to think badly of her. I share this with you because it’s a very real part of our lives, (and the lives of many others) and I think it’s important to be honest and to have integrity. No matter what she does, we understand that it’s not something she wants or chooses to do, but a part of who she is and a reflection of the things she struggles to cope with. We do our best each day to learn and understand more about her and her behaviours; how we can help her to overcome her anxieties and find coping mechanisms to help her deal with the daily difficulties of life. We adore her; and although it may seem that we’re painting her in a negative light, please know this is not the case. It’s not to say things are easy, they are not, however it’s all in the context of our situation and we do not blame her.

I don’t see the bad stuff that happens as a ‘look at how difficult life is for me’, rather, I see it as ‘look how difficult life can be for my daughter’. I remind myself often, that if this situation, or any other feels challenging for me, how on earth must that feel for her? She doesn’t choose to feel or react that way – who would?

But, the reality is, the claustrophobia of living a life like mine can sometimes become overwhelming. The limitations it puts on life mean I often feel trapped in my own situation. It’s difficult to explain to someone who doesn’t live it day in, day out.

For someone who’s always been what others might describe as outgoing, friendly and sociable, I have, at times, found myself becoming more recluse; avoiding social situations because they often seem just too much like hard work. I’ve had moments in recent months where I haven’t always felt as though there was anything to look forward to. And I often panic that my hopes of quality time with Elke before she becomes an adult, are slipping away. I just want to take my daughter shopping, or out for tea or to the cinema – the things that other parents take entirely for granted and that I look on at with jealousy and resentment. Is that too much to ask?

I read an article recently that talked about feeling as though you’ve ‘lost the life that was meant for you’, the sense that you’re living someone else’s life and looking on – almost like an out of body experience. It really resonated with me, but it went on to say that you must reach a place of acceptance about that in order to be able to move on and lead a happy life. I’ve been trying to do that for years but recently reached a place where I found that more difficult to accept, rather than easier.

I think one of the reasons for that is because the ‘system’ has promised us so much. We’d been given hope that hadn’t materialised and that made us feel worse. Without the promise of help and support, the premise that things might get better and that someone might do something to actually help you, maybe it’s possible to reach that place of acceptance but my life right now is filled with days of phone calls, meetings, paperwork, zoom calls, email trails, stuff that constantly needs sorting out. It’s a lot of work – I’ve said before it’s pretty much another full time job. But with that comes the promise of better times which is supposed to make it worthwhile. The dangling carrot. The pot of gold at the end of the rainbow. It’s just that so far, there’s been no carrot or gold. There’s no evidence that the promised better times are coming.

That is exhausting. Like running a marathon with no medal or sense of personal achievement at the end. What’s the point of that?

We had a really difficult few months towards the end of last year. We’ve been working with CAMHS (child and adolescent mental health services) who overall, have been very helpful and started bringing together some ‘bigger picture’ stuff to help us get to the bottom of what’s going on with Martha. I’ve always known she is more complex than an ‘Autism’ diagnosis and we’re starting to make some headway with that. A number of professionals have been working with her to assess her needs, including an Occupational Therapist, a Speech and Language Therapist and an Educational Psychologist. It’s been recognised that although deceptive in her conversation skills, Martha is still only able to process 1-2 pieces of information at any one time. This might be words, instructions or even sounds. There’s also a delay in the time it takes her to process such things, so even if she may appear to have understood what you have said to her – it could be minutes, hours or even days later when she actually processes it. This can have a huge effect on everything. Those anxious outbursts that appear to be from nowhere (as nothing specific has happened at that exact moment) may actually be because she’s just processed something that happened 24 hrs earlier.

Wow. Well, that changes things a bit.

Through this work she’s also received an informal diagnosis of a ‘significant learning difficulty’. Again, this changes everything. I’ve said before that I’m absolutely not interested in labels for label’s sake, however what I hadn’t realised, was the importance of having an accurate diagnosis so that both we, and the professionals who work with Martha, can provide the appropriate support she requires to be successful – and more importantly, happy (which equates to success in my eyes!). It’s also massively important to ensure she is recognised by the support systems she will need in place for her future – whether that be physical, financial or otherwise.

If you think about a diagnosis of Autism – what does that actually mean, to a professional or anyone else? I hear it all the time from people you meet or speak to, or who relate to something I write about. Everybody knows someone who has autism, or someone who knows someone who has autism, but as we all know, the spectrum is vast. It includes individuals who can lead perfectly happy and independent lives, to those who are completely unable to function in the ‘real world’ and who will never be able to live without round the clock support. I’d never really considered this. Although I do sometimes get frustrated when people believe they can relate or understand when their situation is not comparable. But that’s not their fault, it’s mine. It’s mine for not realising sooner the importance of getting right to the bottom of Martha’s needs; of distinguishing what makes life more difficult for her than for another autistic person for example. Martha’s needs are complex.

We believe she also has ADHD, (we’re on one of those endless waiting lists for assessment *rolls eyes). I’ve just always assumed this to be the case and as long as I understood that, that would be enough to give Martha what she needs. What I hadn’t factored in was that unless she is formally given an ADHD diagnosis, then the system will not be able to give her what she needs. The level of support she can receive (especially as she reaches adulthood) is significantly different depending on her specific diagnosis’. Adult support options increase with a diagnosis of ADHD, hand in hand with financial help and access to appropriate medication. So unless we pursue these now, we’ll be doing her a huge disservice in the future.


The Summer holidays are always a difficult time for us. For any parent, it can be a challenging time and in particular for parents of children with additional needs. It’s hard bloody work. All children generally prefer routine and boundaries but for those with autism and anxiety-related issues, this is just a huge, confusing, boundary-less spanner in the works; and they can’t understand it.

Martha’s anxiety escalated throughout the summer holidays to a point where her outbursts and physical aggression reached an all-time high. She’d started lashing out at me in the car when I was driving, which had never happened before.

Going for a drive was something we would ordinarily do to regulate her. No matter the weather, we could always go for a drive. It’s something we had done a lot of during lockdown to alleviate the boredom and manage her need for routine. She finds listening to music in the car generally calming too. Occasionally, we’d go to a drive-through as a treat, to break up the journey and because its far easier to navigate than going to a busy cafe, where any manner of things could happen (spilled drinks, thrown cutlery, sensory-processing meltdown’s due to noise / lighting etc). However even this had become stressful and I didn’t know how she was going to behave or whether she’d lash out at me, out of the blue.

It hadn’t helped matters that at the beginning of the holidays, Martha had been allocated a place at a centre for children with communication issues and challenging behaviours, with a staff ratio of 3:1, for 3 hrs on a Saturday morning. This had been deemed suitable due to the high staff to child ratio and as an opportunity for Martha to develop her communication skills and strategies for managing her emotions and behaviours as well as giving us a bit of respite to spend time with Elke on a Saturday morning. Unfortunately on her first settling in session, the member of staff looking after Martha hadn’t quite taken me seriously when I had asked him not to let go of her hands around other children and within 5 minutes she had attacked two of them in the face. What a f******* disaster. We had failed her yet again. We put her in an environment where she was bound to fail and the repercussions of that lasted the whole summer, leading to a number of serious incidents.

We tried to attend the setting twice more after we’d been assured by staff that they weren’t phased by this behaviour and now they knew what to expect (despite our actually telling them that in no uncertain terms from the outset) wouldn’t allow it to happen again. On both occasions, her anxiety, even before arriving, was through the roof with her lashing out at myself and her dad, and unfortunately it was agreed that it was, unsurprisingly, not an appropriate environment for her. It turns out that the staff ratio was 3 children to 1 adult – not the other way around. Quite a different provision. How did they get that so wrong?

You can’t underestimate the longevity the effects of an experience like this can have on Martha. It’s like a recurring nightmare for her and as she becomes more aware of her own actions, coupled with the fact she knows she is unable to control them, her anxiety around other people becomes unmanageable. She doesn’t want to be in a position where she knows she cannot prevent what will happen. It’s horrible seeing any child hurt; horrifying when it’s at the hands of your own child, but what’s truly harrowing, is watching your own child suffer as they process what they’ve done, witnessing the remorse washing over them, knowing they’ve really hurt someone but that it’s out of their control. So every time they find themselves in a similar situation, the anxiety they might do it again and not be able to control that, becomes overwhelming.

It’s very hard to provide consistent routine through the holidays despite knowing how important it is, especially when as parents, we live separate lives. The girls spent one week with their Dad, then two weeks with me which was then repeated. During this time, Karl was working away at festivals, so most of that time I was alone with the girls. Even though I tried my best to keep things as routined and low key as possible, I have another child to consider; and she wanted a friend to sleep over – not a big ask really, is it? But actually, that can be quite tricky. It’s a change at home; another (new) person, new voices, more movement etc. Martha can be unsettled by this. She also wants to ask that person a thousand questions which can be tiring for anyone. Add to this that she’s also unpredictable and may go into a room and throw something at Elke and her friends; it’s quite a tricky dynamic to manage and takes some pretty understanding friends, who know Martha and what she can be like.

One friend had been with us for a few hours and was clearly tiring of Martha. Elke came to me and said that her friend had offered for them to go to her house to sleep instead of staying at ours. A strange change of heart I thought, given they were here and settling down for the night. And then I realised, that it was because of Martha. She was finding it too much and probably thought they wouldn’t get any peace. I felt sorry for Elke. She’d wanted to have a friend to sleep at her house for a change. She didn’t want to be the one always sleeping at other friends’ houses and never returning the favour. She wanted to have her own things around her sometimes and be able to share them with friends. I asked Elke if she thought it was because of Martha and she hesitated before saying, yes, she thought it was. She looked sad (and I felt sad too although I didn’t want to tell her that) but I said that if that if that’s what they preferred, then of course they could go. My heart sank when the girls’ mum came to pick them up. I’d really tried to be a good mum to both girls and make it as much a success as possible, but so much of that it is out of my hands. This is the part which feels most claustrophobic I think; you want to do things but can’t, and you can’t control / change that either – a bit like Martha and her physical impulses I suppose

I want to do things I can’t. She doesn’t want to do things but can’t stop herself. There’s a huge amount of frustration and sadness relating to both those things which is hard to articulate to people who don’t experience them. I hope I’ve made some sense of it for you in that little anecdote?

At the end of this tricky 5 weeks or so, we’d booked to go visit my family on the Isle of Man who we hadn’t seen since the start of the pandemic. It had been 20 months without a hug from Mum & Dad, my three sisters and extended families, and we were all very keen to get over to see them. Obviously, the gap in time meant that it was quite a big deal for all of us, but most of all, of course, for Martha. A change, a transition, a journey (especially one involving a motorway!) – all Martha’s biggest triggers.

It started well and we made it halfway to the ferry port before things started to go awry. It began with small signs of anxiety. An increase in questions, minor physical agitation and then the seatbelt came off – not ideal when you’re doing 70mph down the motorway. I was sitting in the back beside her and immediately went to put the seatbelt back in. We have a seatbelt safety clip but often the sign of this alone can incense her so we’d avoided using it initially. I tried to put it on, but there was no chance. She quickly lost it and started biting my arms and grabbing for my hair. This behaviour basically continued for the remaining hour of the journey until we finally arrived at the ferry port. The signs of queues and having to wait in the van were aggravating the situation further. The arms I had wrapped around her to hold her as safely in place as I could, had become the focus of her wrath and biting down on them must have provided some relief for her. I, on the other hand, was in agony and my arms were red and swollen with teeth marks.

Luckily, Karl leapt into action and explained our situation to the ferry staff who couldn’t have been more helpful. They arranged a fast track onto the ferry and for a member of staff to accompany us to our cabin. Here, I thought we’d be fine, she would calm down and relax for the 4-hour crossing. I felt a sense of relief wash over me as I handed over a bag of goodies and entertainment to Martha while I headed to the bathroom to run cool water over my poor arms. Alas, it wasn’t meant to be. After mere moments to take breath, she was kicking off again; trying to escape the cabin, throwing herself on the floor, shouting, swearing and kicking the cabin door. I lost count of the number of times she pulled the emergency assistance alarm cord. You would think this might have been avoidable on our part: It wasn’t. More biting over my already swollen arms and what followed was what can only be described as 4 hrs of torture.

Eventually we arrived on the island and to my parents’ house. Martha was mostly ok for the first couple of days. A little anxious and with very little patience but we spent the whole first day on a beach with no other people on it. We did plenty of swimming in the sea (Martha’s absolute favourite thing, much like her Mummy) and let off plenty of steam. We’ve always spent previous trips on the nicest beaches where there are plenty of amenities. However, the problem with that is, that other people go there and the whole thing becomes stressful. We can’t let Martha run free or take our eye off the ball for a moment. This particular day was actually quite relaxing.

My sister joined us, and much to my surprise, swam in the sea with us too. The saltwater was soothing on my very bruised and swollen arms and we all had a great time. The transition home was tricky but not unachievable, and we hoped this was the start of things to come.

Alas, two or so days in, Martha’s anxiety became really heightened. She didn’t want to get dressed (at all). Even the temptation of leaving the house to go to the beach was not cutting the mustard.

We went to visit one my oldest, bestest friends and she would not sit still. My friend, Sarah and I, barely exchanged a few words or a mouthful of coffee before it was time to leave. Martha was becoming restless, physically aggressive and highly agitated.

After a bit of time out, we went for a barbecue at my sister’s house. It was fine for the first hour or so until Martha decided to throw a glass of beer across the room, followed by a bowl of strawberries & cream she’d literally just asked for. It was all too much, and we decided to leave and visit the beach for a walk on the way home to try and regulate her.

Long story short, we decided to keep the next day as low key as possible and abandoned all previously-made plans. We ended up staying at home all day as Martha refused to put on any clothes and continuously attacked me (quite violently). She quickly became too difficult to contain alone and it took both myself and Karl to physically restrain her.

The next day was hell on Earth.

We spent 16 hrs restraining her. We were unable to dress ourselves and were lucky if we had a moment to visit the bathroom or take a mouthful of coffee. The situation became quickly unmanageable and we were all distressed and exhausted.

In the end we had to call the Crisis team on the island. Who in turn had to connect with the CAMHS team in Huddersfield. After a long series of communications and establishing that Martha was recognised to the system, permission was given to treat her. She was prescribed ‘Lorazepam’ (used to treat anxiety, insomnia associated with anxiety, acute panic attacks and convulsions) by the psychiatrist. My sister went to collect these for us and once digested, Martha began to calm down. I’ll be honest, although it was a huge relief, it was also a difficult decision to give such a medication to your child. Although it was a relief to see her calm again, she was also a little ‘out there’. Her pupils were dilated, her spatial awareness was zero and she needed physical support transitioning from one place to another. But she was calm, and seemed happier. For that, we counted our blessings.

The next day however, the first thing she did when she woke up, was attack me. Full scale in the face. She took hold of my hair and pulled so hard that it was coming away by the handful. I couldn’t let go of her for a moment … and so the cycle began again (despite my having already given her another Lorazepam that morning). Karl and I were unable to dress and unable to leave her side for even a moment.

The pivotal moment came when she sank her teeth into my arm and I honestly though she was going to bite straight through it and never stop. I burst into tears as I realised this situation was way out of our control and we needed some serious intervention. I had to call an ambulance.

As it arrived, so did my sister Debbie, who was able to distract and calm Martha. Martha had been naked and the two male paramedics who arrived had requested that if possible she be dressed so they could examiner her. This would have been impossible moments earlier, but the change of face in my sister, and the excitement of the arrival of the paramedics meant that, thankfully, she co-operated.

Along with the paramedics, arrived a police vehicle. Karl ran out to ask them not to come in, concerned that it might aggravate the situation further, and to explain that we were dealing with a 10 year old girl with autism. They were very good and explained that as it was a ‘violent child’ report, it was standard protocol for them to be on hand but they understood the nature of the situation and would sit nearby, out of sight.

Martha was inevitably excited to see the paramedics and with the prospect of a ride in a real ambulance she quickly calmed down and presented as a different child. A short time passed while there was question over whether she needed to be taken in for examination or not. Eventually it was agreed that she should.

We had a lovely trip in the ambulance. The paramedics, (probably questioning why on earth they were even there) gladly showed her how all the life-saving apparatus worked. She chatted away, and you wouldn’t have believed this was the same child that was uncontrollable only moments earlier.

We arrived at hospital where she underwent a series of observations by a nurse, all of which appeared to be ‘normal’. The ward doctor came by and asked us what ‘appeared to be the problem’? When we explained what had happened, he responded with ‘Well, she seems ok now’ in what can only be described as a rather dismissive manner, immediately making us feel as though we’d been over-dramatic in our decision to call an ambulance.

As time went on, Martha was becoming more agitated and unsettled. Her patience of waiting around was wearing thin and we were starting to anticipate an ‘episode’. Luckily at this point, the psychiatrist and crisis team manager came round to see us and took us off to a private room for a chat. Almost immediately after arriving in the room, Martha put on her best show. It was both bloody horrifying and hugely relieving. Just as we were starting to lose faith that anyone would take us seriously, finally a group of professionals witnessed, first-hand, what we had been experiencing.

She began hitting, kicking, biting and spitting uncontrollably in what was described in the report as an ‘apsychotic episode’. She unplugged and threw equipment at us and launched across the room shouting and swearing repeatedly. The tears came streaming down my face. Part emotional exhaustion, part relief, as the lady from the crisis team looked at me empathetically. She asked why nothing had been done about this before and what was happening with her treatment plan at home? She went on to write a thorough report of what she had seen, which was in turn, shared with Martha’s team at home. The psychiatrist prescribed a course of Risperidone and Promethazine (to help with sleep and as a sedative for travel to help us get home safely). Luckily, these helped us get through the last few days of the holiday and kept things on a slightly more even keel, as well as enabling us to travel home safely.

An urgent review was held on our return and it was agreed that medication should not only be continued, but increased, and that Martha’s case should be escalated for immediate review across the board to investigate why things had gone so wrong and something hadn’t been done sooner. As part of this, Martha was put on the ‘at risk’ register. This means she’s known to the ‘services’ as an ‘at risk’ young person so they know who she is and understand the nature of her needs. Also, recognition that she’s at higher risk than most, of having a similar episode or violent incident in future.

When presented with such prospects, it can be daunting and frightening. You wonder all the time if your parenting skills are in question, or if your child could be taken away from you at any point. There’s so much to process. Questioning yourself as to whether you are able to cope with looking after your own child properly. Are you doing the best by them? By your other child/ren? By your partner and your family? It’s a lot.

Unfortunately, a week later, while Martha was still adjusting to the new medication, she attacked me while I was driving the car. She attacked her sister too, who was in the passenger seat, and I had to navigate pulling over on a busy road while she had hold of my hair from the back of the car. We were roadside for over an hour while I got in the back of the car to try and keep Martha calm. This proved futile and she attacked me. We couldn’t go anywhere safely and no-one we knew was nearby. Both Karl, and the girls’ dad, were an hour away. We didn’t want to panic them and potentially cause further distress. Elke was too upset to call the police and so in the end, we called our friend, my business partner Chris, who came out and offered the change of face we needed to alleviate the situation.

Chris managed to calm us all down and drove us home safely. Eventually, Martha’s dad came to get her, while Chris made us a cup of tea and I cooled my arms with icepacks. I still have bruises and scar tissue on my arms from that day 5 months ago.

Since then it has been too dangerous to risk driving Martha in the car, a thing we once loved doing. Another huge limitation placed on our lives and another reason to feel trapped and claustrophobic in our situation. Another choice taken away. Now when we’re at home alone, our only option is to go for walks (which, luckily we both enjoy) but I can’t give Elke lifts to friends’ houses or transport her and her friends to netball training or matches like I used to. Our next step is to work out our options for getting a mobility vehicle which will allow us to put safety measures in place (such as a perspex safety screen) and other aids which will allow me to transport her safely.

She’s settled hugely on her new medication and overall there’s been a vast improvement. She’s still riddled with anxiety and triggered by change and transition, and many of her impulsive behaviours haven’t gone away, but overall we’ve slowly reached a better place.

The last 6 months, have been the most challenging of my life. Probably worse than going through a divorce (which I found pretty harrowing). I’ve battled with my mental and physical health. [I developed severe bruxism as a result of stress and managed to grind my teeth so badly that I pushed all my fillings into my nerves and am now going through months and thousands of pounds of dental work!]. I’ve been on and off anti-depressants, anxiety medications, been going through family therapy, had to make major adjustments to my daily life, and my relationships with the people around me have suffered, along with my work and ability to keep making a living.

So, when I say being a parent is a massive compromise and that it should be given serious thought before leaping in, I suppose this is what I mean. Are you prepared to take on whatever challenges that may throw at you? Are you ready to make life-changing choices (or even have all your choices taken away from you altogether) in order to put someone else first?

Through all of this, I’ve discovered that I am both more patient and less patient than I thought I was, Both more, and less, resilient. I am definitely stronger. And most certainly wiser.

Although parenting has been the most trying and difficult thing I have ever undertaken, it has also been the most rewarding, character-building and my biggest life-lesson by far. I will never be the person I used to be. I will never be able to be the parent I really hoped I would be, or do things in the way I would like; but I am (steadily) learning to live with that. I’m in a much better place right now and on reflection, I reckon I’m prepared to continue the challenge, whether it’s quite as I planned it, or not …… Watch this space!

So, who’s the expert here?

Dr Martha will see you now ….

What makes an expert? I suppose we’re always led to believe that the people with the most expertise are the ones who are the most learned about a certain thing; those with the highest qualifications. Years of study and accumulated knowledge must mean they know everything there is to know about their field, right? Well, I’ve been giving this a lot of thought lately and I’ve decided that’s bullshit.

Think about it; when did you learn the most about something you were interested in? Was it at school in the classroom? At college or university? During a training course or evening class? Yeah you probably learned all the basics, soaked up some new information, but how deeply did that actually sink in? You might’ve been able to start putting what you learned into practise or regurgitating your fresh knowledge to others and sound quite impressive, but how meaningful was that really?

I’ll bet that the REAL learning, the significant learning, the bit where you really began to understand what something meant, how important it was and how it related to other things, was when you actually started DOING it; when you put it into practise, at work, at home, or in your personal life. Am I right?

It’s like learning to drive isn’t it? Anyone who’s learned to drive knows that you don’t really start learning until you’ve passed your test and you’re out there on your own, in full control of a vehicle, on a road, with no-one telling you what to do, or slamming on the extra set of brakes when you don’t notice that hazard in the road.

I remember when I was starting out in my career and the company I was working for at the time wanted to push me in the direction of a sales role. I was young and inexperienced at the time but they had the confidence in me to do it. I, on the other hand, was terrified. Firstly, I’d never had any ambitions to be a ‘salesperson’, and secondly every potential client I came across seemed to be much older, more experienced and more articulate than me. I really didn’t want to do it and couldn’t get my head around how I’d be able to convince these people I knew anything they didn’t.

When I expressed these concerns to my line manager, she pointed out to me that no-one in the room of any meeting I attended, knew more about what I was talking about, than me. None of those people had the passion or first-hand experience of my work that I did. The belief. The results. The evidence. And then it dawned on me; I was actually an expert. I may have had little to no experience in their lines of work or industries; but I didn’t need to. All I needed to relay to them, was everything I DID know and had experience in. Yes! Once that penny dropped I became really good at my job because I had confidence. I knew something they didn’t because I’d learned it, but more importantly, I’d lived it, seen it and breathed it for a long time. I understood it inside and out.

Doing something over and over again is what makes you an expert. Through practical, hands-on, lived experience. By literally doing things, all the time, you learn more about them. When things aren’t working, you try new ways. You experiment. You may be inspired to find out more proactively and apply your experiences to that new knowledge, in a perfectly blended cocktail of ‘expertise’.

You see, I thought it might be useful to share a bit about my experience of navigating our way through ‘the system’. By ‘the system’, I mean the professional touchpoints throughout Martha’s life, whom we’ve had to approach for diagnosis’, education, health matters and general guidance and support.

Everyone’s experiences are different of course. They can differ vastly depending on where you live and the services available to you in your area, the individual personnel you come across along the way, or even down to the age and gender of your child. And of course, all our children are so very different too, so there absolutely should be flexibility and inevitable differences in our journeys. Children’s needs are different and parent’s needs are too …

Overall, my personal experience has been disjointed and inconsistent to say the least. There has never been a through-line of support. By this, I mean there’s been no obvious journey. No clear direction. You might expect, that once you have a referral for a diagnosis (or anything needs-related) or even after a diagnosis has been received for example, that there’d be a clear pathway of progression to follow. (i.e. This action would lead to that, at which point you’re passed on to the next appropriate service or professional and so on). And even once everything you need is in place, that there’d be regular monitoring of the child over the course of their life? This is not always so… Our experience has been predominantly parent-led (i.e. instigated by me).

Other parents I’ve spoken with and become friends with, have often been on very different journeys and have very different experiences so I certainly don’t speak on behalf of everyone. However, if there’s one thing I have learned, it’s that it’s often a game of ‘he who shouts loudest’ and sometimes you have to stamp your feet and scream at the top of your voice to be heard. Sometimes repeatedly. “If at first you don’t succeed” and all that …

Along the way, we’ve been turned down for referrals, diagnosis’, placements, opportunities and funding. We’ve been offered inappropriate or unsuitable support. We’ve sometimes been ‘ok’ for a while and then found ourselves in a difficult place again, asking for help, at which point, the cyclical journey begins once more.

Instinctively, I know when something isn’t ‘right’. I know when I’ve reached my own limitations or when I need some help or guidance for Martha. I’ve often accepted what a professional has told me, because I understand that they are ‘best placed’ to make a judgement, in a ‘position of authority’ or simply know something I cannot (expert?), and therefore have often (albeit reluctantly) accepted the refusal, rejection or ill-fitting solution.

There’s a certain amount of naivety that comes with not believing you are an ‘expert’ in something that results in you having to put your trust in others and let them take the lead – like taking your car to the garage to be fixed. How do you know what they’re telling you is true? Do you really need to spend £300? You’re not an expert … so you put your faith in the mechanic to do right by you. Trust.

I’m going to be really honest with you here and perhaps a little controversial (what’s new? I hear you shout!) but I struggle with how ‘the system’ responds to different types of people. Let me explain what I mean. In my case, for example, I feel that I’m a reasonably intelligent (no comments please!), strong (in the most part), determined, hard-working individual with a good job and a supportive partner. I’m relatively articulate and have a decent, clean and tidy house (most of the time!). On the surface of it, my kids have everything they need. However, that DOES NOT mean that I am coping any better than the next person.

In fact, honestly, in the most part, I feel that having all those things only creates additional pressure. In order to maintain them, I have to work REALLY hard. I have to spend A LOT of my spare time working – either around the home or for my job. I have more appointments in my diary, more deadlines to keep. More washing and shopping to do and all in far LESS TIME than someone who doesn’t work, for example. I have become an ‘expert’ in juggling ‘life’ and mostly being successful at it; but I don’t feel this always goes in our favour where getting help for Martha is concerned.

A friend and fellow SEN (Special Educational Needs) parent recently said to me that she jokes to friends and family saying that she has two jobs; one as a physiotherapist and the other as her child’s caseworker (!). You’re not kidding. The practical day to day looking after of a child with demanding additional needs is a full time job alone, the administrative side of that is another (there is oodles of extra paperwork, additional meetings and procedures involved when you have an SEN child, as well as time spent learning on support groups and forums. I even did a Level 2 Qualification in Understanding Autism in my non-existent spare time, to help me understand more about it!) and then try throwing an actual career into the mix too and you could say we actually have three jobs!

I certainly don’t wish to be a martyr about it; it’s the lifestyle I choose for myself. To some degree, it’s also for my mental health – ‘tidy house, tidy mind’ and all that. (I don’t function very well in a messy environment!) I also need to work for more than just the income it provides. It’s a part of who I am. I need some significance beyond being a mum, and I recognise that about myself. (a whole other blog post perhaps ;0) )

There are two sides to this coin. In some ways I feel the system is far more set up for families in need. Families in worse off situations than ours. That in some circumstances it goes against you when a social worker walks into your house and sees that you appear to have mostly ‘got it together’, you have everything you need and that, in that moment, your child appears calm and happy. What’s the problem?

On the other hand, I do worry about those people who are trying to navigate the system and who are not well-educated, who are not very articulate, who have low self-esteem and lack confidence; who have no support network, no job, no money, no partner, or are in abusive relationships etc. How the hell do those people navigate the system and cope? Perhaps they don’t.

We both have wonderful families and a great support network of friends but what we don’t have is any physical family support on our doorstep. We don’t have family we spend time with on a regular basis or babysitters on tap; Mum’s shoulder to cry on (phone calls are just not the same) or just somewhere to go when you can’t be alone with it anymore. Who do you go to when you’re on the floor?

I have recently emerged from a very dark (and luckily quite short-lived) period of time. A few weeks ago, Martha went through a very difficult period in regards her behaviour. When this happens, (and it often comes in waves) Martha’s behaviour becomes progressively more erratic and physical. She becomes aggressive and violent and any transitions become incredibly challenging

To paint a picture, I had a week-long adverse reaction to my first Covid vaccination which included flu-like symptoms, aches, pains, headaches, lethargy, nausea, diarrhoea, foggy-headedness. I (typically) got my period the day after and a friendly, cheeky little accompaniment of hemorrhoids for fun (yeah – I’m bringing sexy back!).

I’d arranged my jab for a Friday morning before a weekend when the girls were with their Dad as a ‘precautionary’ measure, not really expecting to feel all that bad. Ha haaaaaaaaaa! How wrong could I be? And thank the lucky stars I did!

Martha had already had a tricky week with an ongoing irritating skin rash, which made getting dressed even more challenging than usual. She’s already very sensory when it comes to putting on clothes and doesn’t like it at the best of times (she’s happiest hanging out naked as I’ve previously referenced!) but this rash meant that clothes had become her arch enemy! To add to this we were also going through a very difficult period with our freshly baked teen (which I’ve promised not to get into in my blogs!).

When we arrived to collect Martha from her Dad’s on Sunday afternoon, Martha seemed relaxed. She was pleased to see us and happy to be going home, however, after a few minutes in the van (Karl was driving), all hell broke loose. Martha decided she was absolutely not ready to go home to bed. She removed her seatbelt and launched forward attacking Elke (freshly baked teen) and pulling her hair. She shouted and swore, causing dangerous disruption to the journey. I was still feeling very unwell and was aching from head to foot but had to physically restrain Martha alone in the back until Karl could get us to a safe place.

Long story short, a journey which should’ve taken us 10 minutes, took over two hours with a huge crisis meltdown from Martha and numerous physical restraints. If I’d felt ill before, I certainly did now. The muscles throughout my body had been tested to the limit and I ached more than ever.

The week that followed was hellish with the same behaviours at the beginning and ends of each day, each transition to school resulting in sometimes 2 hrs of meltdowns, attacks, physical restraint or dangerous behaviours. I had my hair pulled, boots thrown at my head, doors slammed on my fingers. You name it!

Meanwhile my health deteriorated. I was having anxiety attacks resulting in little or no sleep. I continued to experience ill side effects of the vaccine and ended up in crisis talks with my GP over whether I needed anxiety and anti-depressant medication. I also made a crisis call to my CAHMS keyworker to let her know that as a family, we were at breaking point and I wasn’t sure if I could cope much longer.

I’d hit another of those ‘crisis’ points that we do every so often (about once or twice a year maybe?) and it really worried me. What if I became too ill to look after Martha? What if I literally wasn’t strong enough to keep her from harming herself, her sister or even me? I know when she was having a full meltdown in the van that I wasn’t strong enough on my own to keep her from launching at Elke, or getting herself out of the door and into the road. These moments are a frightening reminder of how tough things can become and what the future may bring if something doesn’t change. Things got so bad that I actually ended up with Shingles!!! (often associated with both a weakened immune system and stress).

Luckily we’re already on the journey with the right professionals who can hopefully work with us to address these issues going forward. Martha was recently accepted by our local CAMHS team (The Child & Adolescent Mental Health Services), and they’re working with us to explore and understand more about some of Martha’s specific behaviours and help get to the bottom of any undiagnosed disorders or potential treatments and strategies that may give Martha a better quality of life. To make it absolutely clear, I am massively grateful for this help and support and I hope it gets us a little closer to where we need to be. We’re working with a team of specialists whose expertise in their areas of work can absolutely know and do things we cannot. However, I still regularly remind myself that it’s my job to paint a clear picture of who Martha is for them, to relay her individual challenges and needs, alongside our needs as a family. It is also my job to push at every open door (and sometimes the firmly closed ones!); to challenge things and speak up when something isn’t good enough or doesn’t feel right.

I think overall there has been a lack of joined-up thinking up to this point. The support has generally been inconsistent and never really communicated to me clearly. It’s been a series of different professionals, services and individuals coming in and out of our lives at different points and I’ve never been clear on how (if) that all links together and who, if anyone, is looking at the bigger picture stuff. Until recently, with the involvement of CAHMS, there has been no-one looking in detail at all areas of our life and pushing for answers.

Of course, there will always be a part of us that is naive. We don’t have enough varied experiences for example. We don’t know what support networks are available to us, or even that they exist. We have to be open to suggestion and we can always learn something new. I’m not insinuating that well-trained professionals have nothing to offer, of course I’m not. Far from it and I wouldn’t be here if it weren’t for a number of highly trained, supportive, wonderful professionals who have played a part in Martha’s life. Skilled doctors, teachers, therapists, psychologists and some wonderfully experienced individuals… the list goes on. They are, of course, Experts.

But what they are not, is the expert of my child. They often haven’t met my child before and don’t know everything there is to know about her. That can only be learned by listening to those who know her well and by spending time with her, observing and communicating. And they will never know everything because they are not there in the middle of the night when Martha gets up for the third time, or first thing in the morning when she refuses to get dressed and gets herself in such a tizzy about it that she escalates into full crisis-mode, hurting herself and others, unable to process the enormity of the task ahead. When she throws the third full cup of juice across the room or when she doesn’t wipe her bottom properly and ends up with an infection. To witness that look in her eyes as she’s about to do something she’s unable to control. Because I’ve seen it many times before I’ve begun to recognise what that look means – if I’m lucky enough to spot it in time (!). To see the realisation of what she’s done sink in and watch remorse take over. I’ve learned more from Martha in the last 10 years than I could possibly scribe but I’m still learning too!

As parents, we may not know everything there is to know about our child’s particular need or diagnosis but we are experienced in dealing with our children day in, day out. So, I’ll tell you who the expert is when it comes to my child. It is me. I am the expert. I can tell you everything there is to know about her. I can tell you exactly how she behaves when a certain thing happens. I can tell you that what you’re about to try is not going to work because I’ve tried it 100 times before. I can tell you that you’re wrong when you think this particular action is behavioural and I can explain to you in finite detail why this particular support would make a world of difference to our lives.

I am the expert of my child. Her number one supporter and advocate. Which means I will fight to the bitter end if necessary, to get her what she needs and help make her life a happy one. And my advice? You are the experts of yours too! Don’t ever let anyone tell you or make you feel otherwise.

‘You’re so f****** unreasonable!’

Like butter wouldn’t melt ….. 😉

Autism can be all consuming and selfish. There, I said it! It is. The word Autism actually comes from the Greek word “autos,” meaning ‘self’. The thesaurus will tell you that the word “describes conditions in which a person is isolated from social interaction. One symptom common to all types of autism is an inability to easily communicate and interact with others.

Individuals with Autism often find it very difficult to see outside the ‘self’. They can’t always see beyond their own needs and requirements and therefore don’t consider the needs and requirements of others. NO. SHIT.

A couple of weeks ago, for two nights in a row, Martha came into my bedroom in the middle of the night when I was fast asleep. She turned on the lights, sat on the bed, and just started talking at me. When I wasn’t fully attentive (i.e. asleep) she hit me.

I asked her if she’d like to get into the bed with me, she refused and also did not want go to ******** sleep. At this point, she begins shouting and swearing because the situation isn’t going the way she wants it to. I am so tired, (it is literally the middle of the night) and this is seemingly THE MOST UNREASONABLE BEHAVIOUR EVER!!!!!!

After a short while of this, Martha decides she needs the bathroom (despite me asking if she’d needed it within moments of her entering the room *rolls eyes). So, off she goes to the bathroom. I have to follow her as there’s a very high chance she’ll go into one of the other bedrooms at this point and wake up her sister Elke, or Karl. As I reach the bathroom, behind her, I am greeted with the door literally slamming into my face, followed by a tirade of abuse about how much she hates me, what a shit I am – blah blah blah. In this moment, I am beside myself, pissed off with how this night is going. I’m not dealing with it particularly well and frankly, I cannot be arsed. I’m not very good when I’m tired (who is?). ‘You are so f****** unreasonable’, I think to myself as I sit on the floor outside the bathroom.

****

People often tell me what an amazing mum they think I am; how patient I must be and what a good job I’m doing. I struggle with hearing that. Whilst really flattering (and we should all learn how to take a compliment – I’m all for them!), I struggle with it because firstly, nobody really knows that’s true (especially not from reading a blog that I’ve written!). Nobody sees those moments in the middle of the night when I’m too tired to cope or have no energy left in me to do a good job.

Secondly, I’m just really not. I didn’t choose this role or for Martha to be this way, it’s just how it is, and as her parent, I have no choice other than to deal with it, get on with things, and do the best I can. It’s a massive learning curve and we find out new things and adapt our lives accordingly, every, single day. Together as a family. Anybody else would have to do the same.

We all have our own challenges in life and I know many people in far worse situations or who’ve been through much bigger life challenges than we have. I watch in awe as people seem to handle these things so well – but I’m also acutely aware that what we see as onlookers is only the surface of things, and I suspect we all have our moments where we behave perhaps not quite as we might have liked to and where we ‘could have done better’. I’ve had many, many moments I’m not particularly proud of. Daily in-fact.

Martha can sometimes be like living with the most unreasonable person in the world. She creates all the feelings that contradict how you should feel and behave as a parent. For example, if she hurts herself or bleeds, her reaction can be extreme. She can go into a state of panic and will often have a meltdown. However, if you follow your instinct, as most parents do, and try to help her in some way, this can often make things worse. If she’s hurt (despite the pain being caused by a fall or a collision with an inanimate object, for example), Martha takes it out on whoever is nearest at the time, and they automatically become the target of her aggression and abuse. Her reaction signals the end of the world but god forbid you should try to touch or help her!

This has many repercussions. In the case of a nose bleed for example – blood everywhere! Making a situation that can be solved pretty easily ordinarily, so much worse by sending everyone into a panic and creating a backdrop that looks like a massacre has taken place.

She can have a high temperature or feel unwell but point blank refuse to take any medicine. She may have a rash or a cut but won’t let you put cream on it. The number of times I’ve been attacked in the night as I’ve woken her from sleep trying to apply some kind of cream or ointment.

This unreasonable behaviour often applies to simple daily activities too such as washing or brushing her hair (we often reach a stage where we have to cut matted hair from the underneath of Martha’s hair because we absolutely cannot get a brush to it without causing an unnecessary amount of stress and upset). Teeth brushing is horrific and I worry (a lot) about Martha’s oral health and what will happen if she ever has tooth ache or needs any other kind of medical intervention. At 10 years old, she has never yet sat in a dentist’s chair for example and had a proper examination or any of the other treatments given routinely by a dentist.

I often say, (and don’t quote me here in the Usborne book of bad parenting), that if it wasn’t such a risky business, it would be the ideal solution to put Martha under a general anaesthetic once every few months; at which point we’d rush in the dentist, doctor, immunisation team, hairdresser and I would quickly cut all her finger and toe nails (another blood-curdling activity – Luckily, I’m blessed with forgiving neighbours who pretend not to hear anything!).

Other lovely day to day disobliging behaviours include; demanding a drink; which unless is delivered in exactly the vessel she envisaged at the time of asking, at exactly the right temperature and in exactly the correct shade, then one should be prepared to have it launched right back at you! Or having to follow EXACTLY the same morning routine each day which usually includes some kind of ridiculous song or performance on my behalf. Anyone who knows how much I hate performing, will know that kills me (wink – she’s my most grateful and captive audience!)

As a family, our whole lives are pretty much dictated by one person and their needs. This has often left me not feeling fully in control of my own life or life choices and has meant a lot of compromises and missed opportunities.

When things are going well, being Martha’s mum is truly rewarding – possibly more so than for most, because the littlest things can be the greatest of things. We celebrate getting through a whole day without shouting or something breaking; each bath time, tooth-brushing, successful mealtime – where the food ends up in our bellies rather than on the floor – all these little things are huge, celebration-worthy achievements!

I’ve said before that it’s hard not to look on with envy at other people’s lives. People who appear to be doing normal, simple things that we can’t do, such as meeting friends at the park, going to busy places or going out in the evenings when their children are at home. There are definitely moments where I feel envious of others doing these things and who don’t have to plan every trip out with considerable forethought, precision and planning for every possibility.

I’m lucky, as I’m definitely an optimist by nature. (Reading this, you may not agree with me, but I promise I am most of the time!). Generally, I don’t spend too long dwelling on the negatives or feeling too sorry for myself but I have to be honest and say there are some days I do. There are certain moments or periods in time, where it feels like a relentless, impossible task, and it’s hard to climb out of that hole. To see the light at the end of the tunnel. If I think too much about what the future may bring, I can start to feel panicked or claustrophobic. One thing I come back to a lot is what adulthood might bring for Martha, and furthermore what that might mean for her if I’m not around. Who else will accommodate such unreasonable behaviours? Without a mother’s love, that job is doubtless an even greater one.

Despite the challenges, one thing Martha’s unreasonable behaviours do provide, as well as those feelings of achievement in the face of adversity, are many opportunities to come together as a family, to work as a team. Karl will step in if I’m not coping particularly well, or Elke may offer up a distraction or alternative idea when we’ve completely run out of them. They can also occasionally provide (not usually at the time of the event but often in retrospect) amusing moments to look back on and laugh about; and applaud ourselves for getting through and coming out the other side. Alive. And happy.

Sibling sacrifice …

We’ve been having a bit of a tricky time with Elke lately. She’s about to hit her teens with force and after a year of limited social access, is desperate for human interaction. Anyone else with a child in their early teens or ‘preens’ (pre-teens) will know how big an impact the pandemic has had on children of this age. Just at a time when they should have been discovering their social independence, starting to meet new friends and spend more and more time away from family and the home, they were instead forced into a very limiting social situation and into spending more time with family than ever before.

Throw technology, and access to instant messaging and social media into the mix, and you have a heightened sense of social awareness in a way that society hasn’t experienced before. No generation of parent before us has parented their children through a global pandemic in which young people have had access to this level of technology and virtual communication.

Our collective teens’ social life has predominantly been lived out through Snapchat and Instagram over the course of the last year. You can instantly be with your friends at whatever time of day and night you choose. As a result, instant messaging, image-sharing, ‘Tik-Toking’ and face-timing have been truly ramped-up a few extra notches.

I don’t think I speak only for myself when I say how challenging it is; trying to manage the realms of young people on tech and social media through a global pandemic. I am super-conscious of the dangers of constantly communicating in this way (of the social risks, safeguarding concerns and overall affects on a child’s mental health) whilst also recognising that this is currently their lifeline; their only direct contact with the real world and to support from their peers, which has made them feel less alone.

Specifically in relation to our own family experiences, I am all too aware that for Elke, she has also been in almost constant, close proximity to Martha for the whole of the last year. With very little opportunity for time apart (the girls tend to go to their Dad’s together, at the same time) it’s easy to forget that sometimes Elke needs a bit of respite from her sister too!

One of the things that really (really) upsets me if I think about it too deeply, are the sacrifices made by Elke, over the course of her life, to accommodate Martha’s needs. Don’t misunderstand me when I say this, because there are also many things Elke has gained by being Martha’s big sister, for sure. Firstly, she understands more about Autism and has a more open and understanding attitude towards all people with additional needs and disabilities, not just her sister. That first-hand experience, certainly makes you review any pre-conceived ideas or judgements you may otherwise have had without such exposure. It also gives you a heightened empathy towards both individuals and their families, which Elke certainly has.

When Elke was about to leave primary school and head to secondary school, I attended her Year 6 leavers ceremony at the local church. Within moments I felt super-emotional. Here was my first baby about to LEAVE primary school when it felt as though she’d only just started! That time had gone by in a flash, and with all the distractions created by Martha and getting divorced, I honestly didn’t know where it had gone. This wasn’t helped by the fact that the whole school stood up and delivered the most tear-inducing rendition of ‘We all Stand Together’ (or the ‘Frog song’ as we used to call it when I was a kid) where on said line, they literally all stood up together holding each other’s hands in the air. (Waahhhhh!).

Then, came the moment in the ceremony where they were about to announce the winner of the year’s most prestigious school award: ‘The Love for Learning and Learning for Life Award’.

Now, I’d had the ‘head’s up’ from Elke’s teacher that she was going to receive an award that day, however I had no idea that it was this one, or quite what it was for. Elke’s teacher stood up and gave a few minutes’ speech about what the award meant and represented, and how it could only go to someone really special who truly deserved it for their constant hard work and efforts over the year. She went on to say that this person was the most helpful, polite, caring and considerate pupil who put their full self into everything but still always made time for others. She continued to relay a whole host of wonderful things about my daughter before announcing her as the recipient of said award.

Well, I blubbed. Like a baby. Literally sobbed.

I was bursting with pride like never before but also felt incredibly overwhelmed with sadness and guilt. In spite of having been through a really rocky few years; (Martha was going through a particularly tricky time and a lot of our time was taken up with paperwork and meetings as we worked towards her diagnosis.) Elke (a very mature child) was also dealing with her parents’ divorce, transitioning to two homes and shared parenting time, as well as getting to know (and learning to live with) our respective new partners. In addition to this, she would regularly arrive at school with injuries to her face having been mauled by Martha, who at the time seemed to target Elke relentlessly.

How had she managed to navigate all of this while remaining calm and collected at school, dedicated to working hard, always doing her best AND helping others? All the while, according to her teacher, ‘maintaining outstanding manners’? It was really quite beyond me. Where had my little girl gone and who was this young woman before me finding her own way in life despite all her personal challenges?

Then came the revelation. Perhaps that’s exactly it! Perhaps it was BECAUSE of everything that happened she had become that person. Perhaps those experiences are exactly what had made Elke stronger, more determined, more able to go it alone. Whatever it was, the realisation that this young woman was far more resilient, capable and headstrong than I had ever been, started to dawn.

I’ve recently finished reading ‘Untamed’ by Glennon Doyle which had so many moments of realisation and relatability for me. One of the points Glennon makes, which particularly resonates with my current parenting experiences, is regarding her take on the current generation of ‘over-parenting and under-protecting our children from the real world’. She suggests that instead of wrapping our children in cotton wool and keeping them away from life’s negative experiences, we should step back more and allow our children to experience, first hand, the more difficult things in life, that will allow them to become strong people. Albeit, in a safe environment, and where we, as parents and carers, are there to support them whenever they should need us. The following quote regarding her ‘new parenting memo’ resonates the most:

“New memo:

Here is your baby.

Love her at home, at the polls, in the streets.

Let everything happen to her.

Be near.”

Glennon Doyle, ‘Untamed’

It makes me very sad that we’ve not been able to give Elke all the focus and attention she deserves throughout her childhood. It’s definitely bettered her as a person in many ways but it’s also made for a more indignant child in others. And I get that. Karl sometimes says that I make too many allowances for Elke; and I probably do, however, I feel like she’s made so many sacrifices in her life, that I sometimes give her a bit of a break when it comes to other things. I realise it’s not a great parenting method, as the two things don’t always correlate; and what is deemed acceptable in one area of life, doesn’t automatically translate to another, however I can’t always deal with dishing out any more punishments when I feel guilty enough about the ones we’ve had little to no control over.

She’s missed out on lots of things. Going to busy events or meeting up with friends and families, which I’ve tended to avoid over the last 5 years or so because it’s just been too stressful a prospect to navigate, and I can’t put ourselves in a situation where Martha may hurt another child.

One of the things made more difficult by divorce is that you’re often parenting alone, and so can’t single-handedly always keep both children happy and safe in any given environment. While Elke may want a conversation about whatever it is we’re looking at, Martha may kick off because she’s not getting the full attention. If Martha has to be physically restrained, you’re on your own – and so is Elke. Not to mention the embarrassment that comes when your little sister shouts, swears and asks inappropriate questions at the top of her voice. ‘The shame.’

One of the most frustrating things is not being able to put the efforts, energies and support in place for the one child you have who might actually be capable of achieving great things. And before you say anything, I’m painfully aware of how dreadful that sounds.

For clarity, there is no pressure on Elke to achieve great things. And before anyone also challenges my expectations of Martha, I know she will also achieve great things, but I am already aware that they will be within the realms of her capabilities which I accept. I will be delighted if she finds a job and a life that makes her happy – be that becoming the village lollipop lady (not sure about the safety aspects of this one!) or mucking out at the local stables (or this one!), either of which would be top of her list at the moment.

But Elke already has wild ambitions. She wants to travel, she wants to earn good money – maybe be an entrepreneur (Karl and I both wish we’d done that sooner in our careers and are secretly hoping we might be inspiring her in that direction!). She’s capable of wonderful things. She knows her own mind and is far more grounded and self-assured than I was at her age. I’ve supported her as much as I can under our circumstances but I’m always acutely aware of the experiences she’s missed out on; the conversations I haven’t had time for, and the extra help with homework I’ve been too tired to give.

With everything going on lately, I have begun to feel that I’m losing her. She’s navigated life quite independently so far and although I like to think we have a good, close, relationship overall and that I’ve hopefully managed to provide a safe and loving environment in which she can grow up (as well as hopefully a bit of fun, inspiration and certainly encouragement from time to time) I am super-aware that she’s going to go her own way and shine brightly.

Ultimately, all most parents ever want is for their children to be happy, right? And all I really want at the end of it all, is two happy, confident girls. Girls who know their own mind, who know what they want and who aren’t afraid to ask the questions I was.

Actually, thinking about that criteria specifically, maybe I haven’t done so badly after all. Perhaps I have already succeeded …

Expectation vs Reality …

So, it’s December. And we all know what that means. It’s the build up to the most exciting time of the year! Right?

I’ve always loved Christmas – like, I’m a seriously MASSIVE fan. My childhood Christmases were magical. Full of family traditions and excitement. I was very lucky.

My Granny was the best at Christmas. Everything was done properly. From making the Christmas cake mixture weeks in advance and everybody stirring it on ‘Stir-up Sunday’, to gifting us all the most beautiful advent calendars (traditional of course – not plastic and full of chocolate!). She always had a real ‘Yule log’ – especially selected and saved to burn only on Christmas Day; and her homemade Christmas pudding was always filled with carefully wrapped silver coins. I literally have no idea how she did it and executed it all so magically.

My adult (and parenting) reality is quite different to this. Living far away from family means that Christmas is very rarely spent in our own home. It usually involves a long journey, a shift in environment, different personnel and dramatic changes to routine. If we want to spend Christmas with family, which we inevitably do, then all of that stuff, one way or another, is unavoidable.

Unfortunately, for Martha, that means that whilst she enjoys the festivities and gets excited in the same way other children do, the situation can quickly become overwhelming and there’s too much going on for her to be able to cope with. There are also issues around shared parenting of course. It’s one Christmas with me and the next with her Dad. Alternate Christmases with each parent have taken a bit (read – a lot) of getting used to for all of us.

The build up to Christmas throughout December can be pretty fraught to say the least. Managing Martha’s expectations is no mean feat. If you don’t like change much, then December must be a pretty challenging month to contend with. Decorations appear everywhere, and furniture gets moved about to accommodate them. Routine changes to accommodate extra activities such as rehearsals, carol concerts, school plays and other such festive events. People want you to wear Christmas jumpers (which are mostly itchy and uncomfortable) And so it goes on ….

I’ll never forget a couple of years ago, having spent the best part of 2 hours getting Martha ready for bed and settling her to sleep one night in December, only for her to be abruptly woken at 8pm by the dulcet tones of Shakin’ Stevens belting on loud speakers outside the house, followed closely by a banging on the front door by people with collection buckets as the annual Round Table Charity Santa and his sleigh came by. Martha leapt out of bed with both horror and excitement and of course wanted to dash outside to see Santa. The dismay on my face as I waved goodbye to the last two hours (and inevitably the next two hours) of my evening, knowing we’d have to start the bedtime routine from scratch again once Santa had moved on.

To add to all of this, Martha sleeps naked. Her sensory issues mean that she prefers to wear as little as possible most of the time and bedtime is one time of the day that I choose not to battle with her over this. After all, when you’re in bed, you should be at your most comfortable and relaxed, shouldn’t you?

So off she raced towards the front door, closely followed by me (in my own pyjamas, having just showered and got ready to settle down for the evening) holding a dressing gown to cover her up (it was also December = freeeeeezing … but Martha doesn’t really feel the cold either – another story!). This was an unsuccessful mission, as she made it out of the house before I did and proceeded to approach Santa, naked, screaming, shouting (and probably swearing). I just about managed to get her dressing gown around her before she reached the big man, but let’s not pretend that I’d managed to tie it up properly or that all the neighbours and various members of the round table hadn’t already had a glimpse of Martha in all her unbridled glory. Not that she gave a shit of course, because she didn’t. She didn’t even register that it mattered.

Martha still doesn’t grasp the inappropriateness of being naked around other people (at 10 yrs old now, we’re really having to teach her about the boundaries of acceptability and appropriateness and talk to her about why it’s not ok to answer the door with no clothes on or to wave at the binmen as they come by wearing nothing but your birthday suit!)

Anyway, back to the point in hand, and all of the aforementioned factors make it really difficult to make any two Christmases exactly the same. There’s just no feasible way for us to repeat exact routines and traditions from one year to the next.

I listened to a talk before Christmas by a guy called Ronnie Pinder, an autistic adult and self-confessed lover of Christmas. While many people with autism say they hate Christmas (often mainly because of all the changes it brings) Ronnie loves it. But the reason he loves it and can cope with those changes (aside from the obvious fun and festivities), is because Christmas is done exactly the same in his house each year.

To a T.

He watches the same films on the same dates each year, he puts up exactly the same Christmas tree on the same day every year (his tree came from Woolworths!) and follows exactly the same family traditions every. single. year. If all of these things happen as they should and nothing changes, then Ronnie’s Christmas is perfect and he’s able to enjoy it to the full. Changes to this quite rigid schedule, are another matter!

I tried to take some learning from this to help make things easier for Martha this Christmas time and whilst there are lots of things I can do to ensure many traditions are the same each year, making Christmas EXACTLY the same is an impossible feat for us.

I’ve instead come to the conclusion, that the key to as smooth a Christmas as possible for our family, has to lie in the expectations we have of it in advance. We almost have to ‘re-learn’ Christmas all over again. Whilst I can remember and relive all the wonderful memories I have of Christmas as a child, wonderfully executed by my brilliant Granny, along with my parents of course, I have to park that idealism when it comes to what our own family Christmas might be like.

That’s not always easy. Parking even just your own expectations, traditions and excitement can be difficult (especially for the big kids among us!), but when you have others to consider, such as siblings, partners and wider family, then sometimes it means helping them to park or manage their expectations too – or if necessary, making the choice to remove yourself from other people and their expectations altogether. Sad as that may seem, it may make for an easier and more joyful Christmas all round (depending on your circumstances.)

One such expectation is when it comes to the buying and giving of gifts. We’re not always clear on what Martha really wants and sometimes just have to use our judgement – which isn’t always correct.

Martha also cannot pretend to like something or feign interest in something she finds dull; like new clothes or underwear. It doesn’t mean I don’t give her those things, (after all she still needs them like everyone else), but I, and anyone else who gives Martha a gift, simply has to remove their own expectations about how she might react, which may not always be with delight and joy. It may even be the opposite. So be prepared to be told your gift is shit or boring or f****ing stupid.

I can be sorry on her behalf, but she won’t be. She’ll just tell it like it is.

We all have this vision, for example, don’t we (?) of Christmas morning running downstairs to tear open all the presents at once; excitement and delight at each one. Everyone joyful and happy at what they’ve opened and excited with anticipation of what may lie inside the brightly decorated wrapping paper of the next?

This just isn’t always the case for us. Don’t get me wrong, we do have elements of all that and many moments of happiness and delight; more so perhaps as Martha is getting older and beginning to really understand the concept of Christmas; but we also have a heightened sense of anticipation in a fearful way: What’s inside? What if i don’t like it? Frustration at not being able to open something quickly enough.

As Martha is getting older she’s learning to feign excitement too. She’s always mimicked others. So, for example, she might squeal and jump up and down because she’s seen others doing that, or because she thinks that’s what she’s supposed to do in that moment – not always because it’s her genuine response. Learning to fathom when that is the case and when it’s not can be tricky. We can literally be on a knife’s edge of her pretending to enjoy a situation (when she’s really not) and on those occasions things can very quickly turn sour.

Something we have learned is, that it’s just too much for Martha to open all her presents at once. It simply leads to overwhelm and doesn’t give her brain time to catch up with what she has opened and what she might like to spend more time looking at or playing with. Sometimes, if people give her a gift before Christmas, we just let her open it. It helps minimise the anxiety of anticipation and spreads out the enjoyment over a longer period of time, rather than being all at once; potentially resulting in stress and overwhelm. We spread out the opening of gifts over a number of days, rather than everything on one day. What does it matter?

Geoff Evans, an independent Autism consultant and trainer who has worked with autistic people and their families for more than thirty six years, made some really good suggestions about how to manage expectations and behaviours around Christmas, during a recent presentation about autism and festivities.

In order to appease anxiety around expectation in a gift, for example, he suggests that for some autistic people, they may prefer gifts to be wrapped in cellophane (or similar) so they can see exactly what they’re getting while still being able to partake in the joy of unwrapping it. Or you could stick a picture of what’s inside on the outside, removing any uncertainty. Geoff also advocates asking the autistic person what they specifically want and getting them to show you a picture (or the actual thing) and getting them EXACTLY that and nothing else. No surprises please! Their expectation may be of a very specific colour-way for example and even if you get them exactly what they want BUT it happens to be a different shade, colour or size then you should prepare yourself for a negative reaction.

Another tricky thing to manage around Christmas time is control. Especially when it comes to food. Martha doesn’t have any control when it comes to food and eating, so if she sees something she likes and wants to eat, then she will (much like her mother!). Geoff suggests hiding as much away as possible and not leaving it on display. Huge spreads of food will result in a person taking large quantities of food or continuously grazing and snacking. Sometimes, it’s too complicated to understand why there are three packets of my favourite crisps on the side but I’m not allowed to open them until a specific day or time. It’s often easier said than done, but removing temptation as much as possible is the only way forward to avoid hours of nagging, begging and whinging or a worse alternative, an autistic child throwing up from over-eating (I appreciate that any child throwing up from over-eating is never pleasant but there are further complications that come with a sick autistic child which I won’t get into now.)

In conclusion, a lot of what we know, understand and have come to expect from our experiences of both parenting and of traditions, simply has to be re-learned as the parent of a child with autism. As someone with quite ingrained ideas about how things should be (both when it comes to tradition AND parenting) I continue to find this a difficult adaptation. However, I do feel as though I’m getting better at it all the time. With time and experience, comes knowledge and strength. No-one else knows your own child like you do and there are very few instincts more powerful than the parental instincts of needing to protect your own child and wanting them to be happy.

So, I’m learning to park my own expectations, understanding the need to sometimes manage those of others around me and to accept our own reality. And rather than feeling sorry for myself that things haven’t quite gone as I’d hoped – I may even try to embrace our new traditions from time to time!

Time Out

We all need a little time out from time to time, right?

We become overwhelmed with life and sometimes there is no time or head space to think about our own thoughts and feelings or to prioritise them.

I was talking to my colleagues only this week about a term they had come across via a friend entitled ‘the mental load’:

‘The mental load basically refers to the invisible labour involved in managing a household and family, which typically falls on women’s shoulders . Also sometimes referred to as ‘worry work’ or ‘cognitive labour’, the mental load is about not the physical tasks but rather the overseeing of those tasks. It’s being the one in charge of having the never-ending list of to-do items constantly running in your head, remembering what needs to get done, and when, delegating all the tasks to respective family members and making sure they actually get done.’

Kelly Gonsalves, mindbodygreen.com

I’m sure I speak for many women when I say that I definitely carry the mental load in my household. And I don’t intend for this to be a bold, feminist statement or sexist in any way, as I’m sure there are many cases in which the opposite is true, but generally speaking females, particularly mothers, tend to be in a position where they have the overview of all aspects of family life.

Having been divorced and a single parent, for me this has been unavoidable and perhaps more intense at times but I think it’s the same in most households; that one person tends to carry ‘the mental load’ whether married, co-habiting, bringing up a family or maybe even running a business. (My business partner, Chris, actually brought this up in relation to a task I’d agreed to take on as he was concerned it was adding to my already weighty ‘mental load’. Bless him. I’m very lucky to work with someone who genuinely considers my needs).

Let’s be honest, in many cases, I’m sure we carry that load because we (maybe by default) choose to. We see ourselves as best placed and most capable of doing it and actually making things happen. Society often refers to the male inability to multi-task and by nature, women are far more geared up to do that. Our ingrained maternal instincts mean that we naturally put our children and families first. We think about everything we need to do for them and we prioritise that. Once we get (if ever) to the end of that ‘to do’ list, then we might consider doing something for ourselves.

With the kids around, I rarely find I can follow a train of thought, let alone an action. I make a coffee, then two hours later I find said coffee on the windowsill, freezing cold, right where I left it after dashing off to untie a knot, wipe a bottom or unglue a child from the sofa. Martha asks question after question after question all day long; many of them the exact same question on repeat but always requiring an answer. She’s constantly looking for reassurance as to what’s happening next and when she’ll be able to do the one single activity she’s been looking forward to all day or eat more food (these are often one and the same thing!). This means that getting to the end of a thought I was having or a job I was in the middle of doing, is often an unachievable feat.

At Martha’s school, when a child is feeling overwhelmed or over-stimulated (this might be because of noise sensitivities, difficulty in making choices, emotional overload or simply general frustration), they are supported over a period of time to recognise this and can hold up a ‘Time out’ card which allows them to leave the room and enter a quiet space for 5 minutes or so. A self-management technique which enables the children to recognise their own limits and take responsibility for themselves in that moment, taking time out to calm down and regulate their sensory needs; thus preventing further stress, a meltdown or disruption to the classroom. I’ve often thought how we should all embrace this idea in our own, adult lives. We could all do with a ‘Time-Out’ card for when the ‘mental load’ becomes a bit too much and we just need to escape it all for a few minutes (or a few weeks in Greece but this, I know, is fantasy!).

I find myself in a position this week, with my children spending a week of the summer holidays with their dad, and my partner Karl working away for a month, where I am completely alone. A whole week of quiet. No-one else’s needs to consider but my own. Why is it then that so far I have spent 3 of those days working (I’d planned to give myself some proper time off before fully getting back to the daily grind in September), half a day booking events and doing accounts for Karl’s business, half a day tidying the girls bedrooms, organising school uniforms and shopping for things they’re going to need for school and a whole host of other mundane tasks and household chores that (not urgently, I might add) ‘needed’ to be carried out?

In fairness, I have also integrated lots of nice things for me among all of that. I’ve taken time to read and finish a good book (Big Magic by Elizabeth Gilbert which has spurred me on to do more of the stuff I love like writing this blog! I recommend it to anyone looking to embrace a more creative life. Thanks for the accidental surprise Katy May!).

I also took myself to M&S and treated myself to a week’s worth of delicious, easy meals for one and a couple of pre-mix Pina Coladas (because for anyone who hasn’t been introduced to the delights of pre-mix M&S Pina – you don’t know what you’re missing!). I’ve made plans to see lots of friends who I don’t often get to catch up with, and I’ve even squeezed in a couple of good films from the comfort of my own bed. Alone. Completely alone. Did I tell you I was alone and had the whole bed to myself? Oh the joys of having a whole bed to myself and the rarely experienced, but deep love I have for ‘starfish sleeping’ – let’s not underestimate the small things. 😊

So this is a reminder to you all to take some time out. A break from the ‘mental load’. Carve out time for the things you love. It’s so important to look after yourself, make time for self-care, give yourself a break and press the reset button. Go and have a really nice coffee alone somewhere with a good book. Or spend time with friends who fuel your fire. Buy the trashy mag. Watch an old film. Devour a box of your favourite chocolates or go for a wild swim!

For those of you who don’t know, I love a wild swim (although I’ll be honest and say I’m not an all-year-rounder. A fair-weather swimmer if you like.) Sometimes the thought of dragging myself out of a warm bed because I’m child-free and can go for a wild swim seems like complete madness; but I never, ever regret that choice. The feeling of exhilaration when I first enter the water is child-like. We don’t feel those things too often as adults and it’s a friendly reminder of what it was once like to be free and without the weight of adult responsibility bearing heavy around your neck.

The closeness I feel with nature while I swim, which I’m aware sounds a bit ‘out there’ is real. The weightlessness of my body transcends to my thoughts, feelings and stresses relating to daily life and momentarily, they disappear. When I emerge, I feel new again, comforted. I feel a sense of accomplishment, of deep satisfaction. I dry off, pour a coffee and start anew. If you haven’t tried it, I recommend you do. And if Wild Swimming isn’t perhaps for you, find YOUR thing. Whatever it is that makes YOU feel that way and do it as often as you can!

I’m now making time to do some writing before going out for a long lunch with a friend. I haven’t yet managed to fit in a wild swim this week which is disappointing but the weather’s been flipping miserable so it hasn’t been either possible or appealing thus far but there’s always tomorrow …… I have one full day left and anything is possible!

Nothing Compares 2 U …

I want to talk about a touchy subject but one that seems to keep cropping up in all sorts of varied contexts lately; comparison.

We’ve been brought up in a society that seems to constantly compete and compare. Firstly, I believe our education system has a lot to answer for with it’s unrivalled obsession with academia. Once you step foot into secondary school, divisions are immediately created by the ‘streaming’ process where young people are taught in ‘sets’ according to their ability. I’m not saying this is wrong necessarily, I understand this system has it’s benefits and that there’s a need to do this to some degree to inform teaching and progress rates, however, such a system makes it so easy to forget all the other important aspects of an individual, the things, other than academia, that make them clever and capable and interesting.

It also seems to diminish the significance of alternative learning styles as well as the benefits of learning from others. The focus has always been academic ability and I’ve always been a big believer that this is just one small part of what can actually make a person ‘clever’. So many other qualities make a person interesting or successful that don’t display themselves as academic that aren’t always valued or nurtured in the same way by the education system as it stands: physical skills, inter-personal qualities, a great sense of humour, the ability to connect, a great eye for art, the ability to craft and to make, the ability to see things in a different way to others, a caring and helpful nature; the list goes on…..

At school, even when the subject matter was not academic, but physical, for example, the focus on competing and the importance of winning always seemed to overshadow the simple enjoyment of physical activity. I’m sure this is one of the reasons I don’t really enjoy it. I was never very good at it and was never going to win anything so what was the point?

I recall sports days at primary school where the best I could hope for was third place in the egg and spoon race. That’s an actual truth right there. I remember it so distinctly because I’m certain it was the only sports day placement I ever received. I reckon I’ve still even got the certificate somewhere, tucked in the back of my Record of Achievement folder, such was it’s significance.

And do you remember the horror of your fellow classmates being allowed to pick out their own teams for sports at school? Do they still do that? One by one, the best, most able sports people were selected (closely followed, if not preceded, by the most popular or threatening kids in school) until only the unpopular, unfit kids remained. How dreadful. It makes the hairs on my arms stand on end at the thought of it.

I appreciate there is absolutely a place for competitive sport and that it should be encouraged and nurtured in the right time and place, don’t misunderstand me (my sporty little sister is a netball coach and would kill me for saying otherwise!) but imagine a system that instead of focusing it’s energies all on the people who are already good at, and interested in sport, looked more closely towards the children that aren’t. Those who aren’t good at it, who don’t at first appear interested. Imagine if you could find a way to help them enjoy exercise, to help them identify a type of physical activity that gave them pleasure, that they could engage with, just for fun! Not to mention the obvious health benefits (mental as well as physical). Imagine the increased self-esteem in realising that you don’t actually have to win or be good at it – just enjoy it!

Unfortunately, I’d say that in my personal experience, instead of really learning to appreciate the life-long health benefits of keeping fit and finding fun in physical activity, the physically capable were encouraged to become athletes and sports people and the fat kids were left to get fatter.

There are so many different aspects of intelligence. Although I was reasonably academic at school, choosing to focus my efforts on my passion – theatre, was often considered ‘a waste of time’ by teachers and peers. When it came to choosing options in Year 9, teachers and careers advisors would frequently question how useful ‘theatre studies and drama’ would be for my future. They’d say that it ‘wasn’t really academic enough’ and ask ‘how it could possibly lead to a career?’. Luckily for me, my parents never questioned it too much and always supported my choices.

I always had a passion for theatre from as early as I can remember. I loved performing and I loved watching it. The thrill I would get from seeing all kinds of live performance and theatre was unlike anything else I’d experienced. The way it could immerse me, swallow me up with whatever emotions it conjured up; true escapism from real life. As I got older and was lucky enough to experience theatre in an education setting, I could see first-hand it’s ability to educate, to influence opinion, to challenge perception and emotionally engage it’s audience, encouraging them to question things they thought they already knew and challenge them to behave differently. I saw it’s power and I knew I needed to be a part of that.

These days, I can happily stick a firm and smug middle finger up to those who questioned my passion and judgement because I have, so far, made a very good career from my love for theatre and have put my Theatre Studies A level and University degree to very good use, thank you very much. Creating and delivering theatre that does exactly as i describe above is what I now do for a living. So, from personal experience I believe that following your passion and doing what you enjoy will always take you far. Even if you don’t earn enough to annually holiday in the Seychelles or live in a small mansion, it will mean you are almost always happy in your work. And what can be more important than that? (#mentalhealth)

Moving on from the education system. There’s a lot of talk about ‘Comparison Syndrome’ lately with a particular focus on social media and our modern-day ability to gain a little ‘peak’ of insight into each other’s daily lives.

I. LOVE. INSTAGRAM. There, I said it! I do not, and will not apologise for my presence on it. It’s one of my favourite hobbies and a healthy way of documenting our daily life and sharing images that I feel are beautiful or meaningful (to me). It’s a great photo-documentary I’m always able to look back on. I can remind myself of what was going on at any given time of our lives – especially the good times, the positive memories.

I’ll be honest, I don’t always want to post the shit stuff. I’m happy to be open about the more challenging parts of my life and share them with friends or anyone who directly asks, and I regularly refer to those, more ‘trying’ moments in my stories (which disappear after 24 hrs) or in my blog. But I don’t necessarily want to look back on videos of Martha having a meltdown or me looking shocking without my make-up or feeling frumpy and overweight. I want to feel good about myself. I want to feel good about my life and look back on the happy, positive moments, not dwell on the less happy ones. In doing so, I’m not trying to make anyone else feel worse about themselves. It’s a snippet of my life and anyone using social media (at all) should always do so with applied logic and social intelligence. It’s not for airing your dirty linen and it’s certainly not a completely true reflection of reality. It’s a small part of that. We all have the choice to use social media in the way we choose to, in the same way we have the choice whether we want to use it at all (!). The trick is, not to compare your own life to that ‘carefully selected representation’ of others. It’s always only perception anyway. We’re all different and choose to live our lives differently.

One of the comparisons I find particularly infuriating is relating to autism. I completely get why people do it; we’re all looking for common ground and it’s human instinct to want to make someone feel better, by showing comradery and letting you know you’re not alone in something, I get that, but I can’t tell you how annoying it is when you tell someone about an issue you’re having with your autistic child and they respond with something along the lines of ‘Yeah, but they (kids) ALL do that don’t they?’ or ‘That happens to the best of us’ or ‘We’ve all been there, haven’t we?’. Actually no. Your experience of that particular thing is NOT the same as mine. Or your one experience might be just that; one experience whereas mine might happen EVERY. SINGLE. DAY. I do understand why you feel the need to compare your neurotypical child with my, neurodiverse one but please try hard not to. In the same way I will try not to compare my experiences with yours – even between autistic children no two experiences or children are ever the same.

That’s actually one of the most difficult and lonely things about parenting Martha. Even though I subscribe to a number of ASC (Autism Spectrum Condition) support groups and forums, and despite the fact she attends a special school for others with the same or similar diagnosis, it’s hard to find others who can completely understand or who have the same life experiences as you do. There are similarities of course and it’s comforting when you find those areas of common ground but it’s rarely the same.

Martha, for example, can be very physically aggressive. She doesn’t care whether your child has autism or not, whether they are smaller than her, or if they suffer with anxiety in the same way she does; she still, for whatever reason, may attack and hurt them. No-one likes it when their child is hurt (of course they don’t!) and in my experience, people (on the whole), are not very understanding or forgiving of children (or their parents) who hurt others , even if you try explaining to them that your child has autism and that they’re unable to express their emotions another way and don’t really understand what they’re doing. Mostly, people just don’t get it. And why should they? I don’t get it either. It’s out of the realms of what we know and have come to expect of ‘normal’ social interaction. Hurting one another is not acceptable and we’ll do anything to protect and defend our own children, won’t we?

Anyway, I’ve garbled on rather a long time and find myself going off-topic and I’m still not really sure I’ve said what I wanted to (!).

I suppose, overall, it’s just to encourage you not to compare yourself to others. It doesn’t matter a jot what someone else is doing with their life and how that differs to yours. Do what you love and to hell with what anyone else does or thinks. I definitely believe you can take enjoyment in seeing what others are up to; I bloody love a good old scroll through Instagram seeing how people spend their time and money or how they decorate their homes. I take so much inspiration from others and am always finding new makers and products I like by following like-minded people and accounts on ‘the gram’ (which does no good for my bank balance!). But I do try not to measure those people and what they are doing, against my own life. We’re different people, with different tastes and preferences, in different circumstances and whose paths have led them to different places in their lives. How can you compare that?

They say that comparison is the thief of joy and I say that’s so true.

‘A flower does not think about competing with the flower next to it, it just blooms.’

Zenkei Shibayama

Lockdown – the reality

A summer cool-down …

Wow. I can’t believe it has been almost 5 months since I last wrote a post! There I was in March, all focused and positive, in full planning and control-freak mode, ready to take on my new job as full time teacher to my two girls, whilst trying to keep my own business afloat during seriously tricky times all while running a household. Whoopee!

What was I thinking?

To be fair, at first, all went reasonably well. It was all a bit of a novelty and almost exciting (is that weird!?). We committed to a routine and were all up, dressed and breakfasted in time for 9am Joe Wicks. That lasted one day for Martha and I. (Elke saw it through right to the end and only missed a couple through no fault of her own.)

We’d created our own daily timetable and on the whole, managed to stick to something that looked a bit like it, for a while. Joe Wicks was followed by an hour or so of school work, (while I had a work zoom call, Martha allowing) then a daily walk, lunch and more school work. Later, the girls might play outside, help me bake or prepare dinner or we’d find some other activity to do together. I even got Martha to sit down at the computer and do Reading Eggs for half an hour or so most days – until one day, out of the blue, she decided that she “HATES Reading Eggs” and “never wants to do it again” – and stuck to her word. We haven’t revisited it since that day.

As time went on and the rules loosened a little, our daily walk became a daily drive. Exercise went almost completely out the window. The motivation to do any school work started to diminish and everyone became a bit restless. Then, completely out of the blue, our cat died.

Ethel literally dropped dead. She was less than two years old and didn’t appear to have anything wrong with her. She wasn’t hit by a car and didn’t show any signs of being poisoned, so we, along with the vets, came to the conclusion that her heart had just failed her. It must’ve been weak and just couldn’t cope. Obviously, this was totally unexpected and a complete shock for us all. Particularly Elke initially, who had wanted her so badly for such a long time and took prime responsibility for her.

We tried to protect Martha, by not really telling her what had happened. We shielded her from seeing the dead body, took it away and waited until she asked where Ethel had gone, when she realised she hadn’t seen her for a couple of days. Our response was to say that we didn’t know and that she’d just disappeared, but it didn’t take long for Martha to realise the truth and pick up on conversations that were taking place around her. I eventually admitted that Ethel had died when Martha asked me outright. I couldn’t lie to her directly. I honestly didn’t think she’d be too bothered. She and Ethel had tended, in the most part, to stay out of each other’s way. Ethel was flighty and Martha doesn’t like anything unpredictable, so they generally stayed apart.

I couldn’t have been more wrong. Over the days that followed, Martha’s behaviour became completely unpredictable and irate. You could describe her as being both of those things ordinarily, but this was next level. Objects were thrown and glasses smashed on a daily basis. I’ve genuinely lost count of the number of things that have been flung across the room or items that have been broken over the last few months.

Martha was cross, furious even, and her behaviour was all over the place. She refused to do ANY school work, her swearing escalated to another level and she absolutely would not cooperate with anything she was asked to do (or not do!). Then one day she literally broke down in tears saying she wished Ethel hadn’t died and she missed her.

We reached saturation point after about 6 weeks or so (I think I did pretty well to survive that long!) when after another day of throwing, swearing and hurting both me and her sister, I lost my cool and burst into tears. Proper, full on sobbing mess. You know the one: when you can’t breathe and feel like you might throw up kind of sobbing? Martha watched me in shock and horror, but rather than respond with remorse and empathy, in the way one might expect from a neurotypical child, she was even more furious.

Martha still finds emotions very confusing. She feels them – perhaps more intensely than most, but doesn’t comprehend them and can’t seem to compartmentalise them in the way most of us do. So instead of being upset and horrified because she’s hurt me, or showing remorse in the form of a cuddle or apology … she does the opposite.

I was sitting at the bottom of the stairs when I lost it. I dropped to a sitting position and couldn’t move. I’d had enough and couldn’t take any more. I think I’m usually quite strong and resilient, and by God, I’ve learned to be far more patient than I ever imagined I could be …. but I’d reached my limit. My balloon burst, my sink overflowed and every other analogy you can think of but I. Was. There. And what did Martha do? She disappeared into the playroom and returned with whatever she could to fling at me – FULL PELT! She shouted and swore at me and went in and out of the playroom returning with whatever she thought would hurt me most; because she couldn’t cope seeing me that way. And I couldn’t stop her. I literally couldn’t move. You know when you’re so fearful of a situation that your body goes into shock and you freeze? Yeah that. So I sat, sobbing while Martha repeatedly threw things at me until I eventually picked up my phone and messaged my partner Karl asking him to come home.

He did. And proceeded to scoop us all up, bundle us in his van and drove us to a nearby reservoir where we all went for a swim and a cool down. He told me how surprised he was that I’d lasted so long and that he thought my bubble would’ve burst a lot sooner. He’d been waiting for that moment and had already made a plan for that situation: to come home immediately and completely change the personnel, the environment and as a result, the dynamic. And it worked. Like a dream. I’m so grateful to him for just getting it. And for loving us.

I felt guilty for reaching that point. For losing it and allowing Martha to see me in that state. I felt like I’d failed. I hadn’t made it through; like it was a test or something. Sometimes I feel sorry for myself. I find myself wondering what things would be like if they were different and then I feel incredibly guilty for feeling that way. It feels very selfish to complain. I look at other people’s lives or photos of other people’s children running off, interacting and playing with other children and I feel envious. I wish we could have that. And then I feel horrendously guilty again. So many people are longing for children they can’t have, or have children in far more challenging, upsetting circumstances than ours. And I have this incredible little girl who is bright and beautiful and funny and entertaining (actually I have two of those!) so what the fuck do I have to complain about????

When I feel this way, Karl quietly corrects me and tells me that it’s ok to feel like that. It’s perfectly fine to wonder what things might be like if they were different. It’s ok to be angry with the world for a while; to air your frustrations. And it’s ok to feel sorry for yourself sometimes. It’s a process. You go through it. But then when you’re done and you come up for air again, you remind yourself of the good things (of which there are many and I am genuinely very, very lucky!) and you get yourself back on track. You re-set, refocus and you get back on it.

The last few weeks have been much better and we’ve reached a place of reasonable calm again (probably not compared to most, but for us, it’s good). I have learned not to underestimate Martha’s continually developing understanding of situations and that it is my job as her parent, not just to protect her, but to communicate fully with her and help her to understand what is going on. I should have dealt with things differently when it came to Ethel’s death. I should’ve involved her, spoken to her about it lots and helped her to understand that it’s a part of life, albeit a very difficult one. She’s far brighter than I give her credit for and knows far more about what is going on around her – even than I probably do.

I’ve also learned not to apologise for how I feel. And not to supress it. We are not in control of how we feel. We just have to FEEL it in the most real and tangible way we can. Allow it to happen, talk about it if you can BUT do not apologise for it. We’re all going through a challenging time one way or another, and in the context of our own lives and situations, it is real. How we feel is not comparable, even if one person’s situation is deemed to be far worse than another’s. We’re all entitled to feel it. More than that, we can’t NOT feel it. We just have to go ahead and allow it to happen. And then, when we feel ready, we move on.

We have a new kitten now, Olive, who was rescued from a building site at two weeks old; just a few weeks after we lost Ethel. She’s a little gem and settling into our family really well. Instead of glossing over things and not accounting for her very real feelings, we fully involved Martha in the planning for Olive’s arrival, choosing of her name and the daily responsibilities involved with having a pet.

The school work never came back but that’s ok. I’ve realised we have lots of other quality experiences to make up for that. We learn as we go along, and the most important thing for all of us is our happiness and mental health. I’m finding it all a bit boring and monotonous now if I’m honest, and looking forward to getting back to some kind of normal routine come September (fingers firmly crossed). However, I can’t pretend that I won’t miss my time with the girls. It’s been one of the toughest challenges of my life but also one of the most rewarding and one I don’t think we’ll ever get again – at least not in quite the same way. And let’s bloody hope not, because I do appreciate that for many people this has been a far, far more devastating time than it has for me. Losing ones they love, losing a job they love, losing financial stability and so much more.

Here’s to allowing ourselves to feel sorry for ourselves occasionally, whatever our situation. To really FEELING it, and then, when and if we are ready, to moving on.

At first I was afraid ….

Hello everyone.

Well, isn’t time a funny thing? I had absolutely no inkling when i started this blog two weeks ago that so much would change in such a short space of time. To be honest, if you’d have told me, I wouldn’t have believed you! WTF?!?

I hadn’t planned for my blog to go in any particular direction, in fact if anything, I thought perhaps I might go back over old ground, filling you in on the past few years, my autism journey with Martha, how I survived divorce, both emotionally and financially … blah blah. That’s kind of how i saw things going, (and they may still do at a later date), however now that things have taken a funny turn, I thought I’d talk to you about the here and now instead.

So, we all find ourselves in a very unusual situation. Something I for one had never considered possible in our lifetime. Call me naïve but it genuinely hadn’t crossed my mind that something like this might happen. From Monday (or even last week for some of you) many of us will have our children at home for the indefinite future. Aaaagghhhh!

For those of us with autistic children, this is a particularly scary challenge. In saying that, I don’t mean to undermine the scale of the task for any parent of neurotypical children however, as I’m sure most of you know, individuals with autism in particular, struggle with changes to their routine. They like things to remain the same. Martha won’t take any pleasure or excitement in not going to school. It’s part of her daily routine and that makes her feel safe. She knows what to expect and when things will happen. She’s not a huge fan of weekends or the holidays as to her, these are unpredictable times which can be both frightening and worrying for her.

At the moment, because Martha has an EHC (Education, Health and Care plan) in place and attends a school for children with higher end additional needs, her school is officially staying open for the time-being and I can make the choice whether to send her, or not. After much consideration, I have decided not to.

Government advice is that if you can, you should keep your children at home and so that is what I have decided to do. You may think I’m mad, and that if you had the option, you would send her, and it’s true, that if I could keep her in school a little longer that she may be calmer and happier, and that Elke and I would stand a chance of getting our work done in peace (Elke’s school work and my business work – which of course most of us still have to fit in somewhere amongst all this!). However, realistically, how long can that go on for? The school will assess on a daily basis how long it is able to stay open, and i feel it’s inevitable that it too, will close at some point. Also, we’re all beginning to understand more about the importance of social distancing and I’m not sure I want to expose either Martha, or anyone at her school to any higher risk than necessary.

My feeling is, that life is going to change for a while and we will have to find a new way of being. We may as well start that new routine altogether, from Monday, and try our best to make it the new ‘normal’. For a little while at least anyway.

The girls are spending some time with their Dad this weekend, which has given me a couple of days to get my head around the idea and make some preparations. In order for the next (however many!?) weeks to work, we will need to make our days as routine and structured as possible. This will be as much for my own sanity as anyone elses!

We will get up at the same time each day, and each day will be timetabled. That sounds almost draconian but I don’t intend for it to be rigid or inflexible, just enough so that we can all remain focused, productive and so that Martha can feel certain about what we are doing next. Schools working with autistic children predominantly use something called a visual timetable – something most of you may be familiar with from when your children were in nursery? This helps with the child’s expectations about what is coming and what they need to do to get there. It reduces anxiety levels because it takes away uncertainty and helps eliminate unpredictable and unexpected things from happening.  They also use a simple ‘Now & Next’ model, to help learners understand that first (now), we will be doing this piece of work, but then (next) you can choose an activity yourself (or have playtime or a snack and so-forth).

When the girls return from their Dad’s tomorrow evening, we will sit down and make a list of headings of ‘types of activity’ and then we’ll identify specific activities that come under each header . Although I will encourage the girls to take a lead on this and want them to come up with their own ideas, I anticipate that they will come up with something along the lines of the following (for example):

  • Household chores (includes making meals, feeding cat, washing up, sweeping, watering plants, emptying bins)
  • School work (includes specific assignments / worksheets provided by school, reading, educations apps and activities)
  • Exercise (go for walks, trampoline time, netball practise, gardening tasks)
  • Down time / Fun (reading for pleasure, tv time, tablet / phone time, choose time – maybe playdoh and other sensory activities for Martha)

We’ll then break each day into chunks and assign headings into each section of the day, ensuring there’s a nice balance between work, fun and exercise, and allotting plenty of sensory input to keep Martha on a level.

I’m not going to stress out or put added pressure onto any of us to have to keep up with school work, or worry about how to teach certain subjects. I will use the time to teach them what I can; life skills and experiences. It will certainly include any suggestions and activities provided by school, where possible, but it will be peppered with teaching them how to weed and plant, how to wash the dishes and clothes, baking, nature walks and being creative too. This time together is going to be important to all of us and something we will remember for the rest of our lives, so I plan to make the best of it that I can.

On a completely different note about surviving the coming weeks, I know there are many of us in difficult financial and professional positions. The economy is suffering badly and people’s livelihoods are threatened. We have to look for new ways to work (where that is possible – and I realise that for many, it is not!) and try to be creative in how we get through this to the other side, supporting one another as we do so.

Karl, my partner, is a self-employed jewellery-maker. At the moment, his main form of income comes from selling his jewellery at markets, events and festivals, most of which have been cancelled for the unforeseeable future. Both he and his fellow makers, artisans and independent small businesses will struggle to survive over the coming months, and so Karl has set up a little project called ‘A helping hand’.

The campaign aims to share the details of as many fellow makers as possible on both Karl’s website and Instagram feed as his small way of helping to raise awareness of their businesses and products, and to encourage people to make small, online purchases to help these businesses survive during these unprecedented times. Rather than bulk-buying bog roll and pasta, why not make a considered purchase of something either useful or beautiful from someone who will wholeheartedly appreciate your custom?

We have many maker friends who produce wonderful, handmade, quality products such as candles, soaps and pieces of art or jewellery that can be bought as gifts to cheer up someone self-isolating, or just to lift your own spirits at this difficult time when we could all use a little ‘pick me up’. Please take a moment to visit https://rooksandroses.uk/makers-community/ or https://www.instagram.com/rooksandroses/

Makers Community

As I was making preparations earlier today (preparing a visual timetable, sensory treasure basket, collating ALL the snacks and filling the hot chocolate and biscuit jars!!) I put on my 40th Birthday party playlist at full volume and danced my way around the kitchen like no one was watching (I hope they weren’t. I really go for it when I’m alone!). It’s full of tunes that lift my spirits and remind me of brighter times. In these times of coming together and sharing what makes you happy, please feel free to take a listen and dance around your own kitchen. I’d love to hear if anyone else has an uplifting playlist they’d like to share. If you do, please pop the link in the comments.

This Thursday evening I have plans for drinks and nibbles with some of my best girls! I can’t wait to see them as we’ll all need a break and an outlet come Thursday evening.  The fact it will be a ‘zoom date’ through my computer screen and I won’t be able to give them all a huge hug is secondary – It’s all about the virtuals now dontcha know!

I love how we’re finding new ways to be and embracing the current situation. I hope you can all find a bit of happy in the coming weeks. Lots of virtual love to you all.

Stay safe x

Getting started …

So, I first started writing a blog about six years ago, when my younger daughter Martha, was three. I wanted to document our journey towards getting a diagnosis of Autism for her and how we went about putting  in place all the support she would need in her life. I suppose I wanted to help others who might be embarking on a similar journey, by sharing our experiences, highlighting some of the difficulties we faced and most importantly, how we ultimately overcame them. In essence, I suppose I thought that putting it all down on paper (or computer at least) might also be cathartic for me – a way of coping and making sense of the whole process in some way.

Even then, I felt the blog market was saturated and wondered whether it was worth the effort, and my then, not particularly supportive partner didn’t exactly encourage the idea. To be honest, with all the dramas that then went on to unfold in the coming year, the whole idea just got swept up with the rubbish and no longer seemed to be a priority. Months of paperwork followed in order to get what we needed for Martha, in terms of health, education and financial support (it’s a minefield!), and quite quickly, writing became a chore rather than a pleasure and something I ‘had’ to do to get us to the next stage.

Looking back, I wish i had continued that blog. Or even just that I’d continued to write it all down, without necessarily sharing it with the world. Things got so complicated and challenging, that I can hardly remember the detail of it all now, and if someone asks me how we did this or achieved that, I misplace the timeline of it in my overflowing mind and feel a fraud. I can’t remember how i felt about it all or what my innermost thoughts were at any given moment in time. I know it was confusing, tiring, emotionally exhausting and felt like a continuous battle for a number of years but I’m not always able to pinpoint specific feelings in a specific moment.

Anyway, a lot happened in the years that followed and over that time I have become increasingly frustrated with myself for not writing; for not documenting stuff so that I can remember when it happened and how I felt about it; mostly as a way of managing my own thoughts and feelings about things and working through them. There has been a subconscious niggle that something is missing from my life, that I’m not quite fulfilling some inner desire. I still don’t know that blogging or even writing is it but I’ve decided to give it a go anyway and see what happens. If nothing else, I hope that jotting down my thoughts and feelings about things, telling you my stories, perhaps helps someone else. That what I have to say resonates with someone else and that we can connect on similar subjects, feelings and passions.

So here it begins. I don’t just want my blog to be specifically about Martha or our journey with Autism – that’s just one part of our very full life! But it is a very large and important part so I will definitely be talking about it and hope that I can engage with others in a similar place with familiar experiences. However, I am also mum to another amazing girl, Elke, who is 11 and presents her own rewards and challenges (pre-teen Mums, you know what I mean!). I am also 40, which is an interesting point in any woman’s life (I have never considered Botox but it’s starting to appeal). I am a business owner (I run two quite different business with two quite different partners!), I have navigated a divorce (fuck me!) and I’m sure a plethora of other interesting stories and anecdotes will emerge over time.

I hope I can be consistent and regular in terms of producing content. I hope I can provide interesting reading and I hope I am able to connect with others. But most of all, I hope that I enjoy it and find that it gives me some creative satisfaction, despite what anyone else thinks ;0).